Rett Syndrome Survey Results
Rett Education, Therapy & Technology Survey Results
Families are unhappy and need help with the following issues:
Attitudes Regarding Rett Syndrome
- The representatives from the Department of Education and the Office of Mental Retardation and Developmental Disabilities that I interact with are knowledgeable about Rett. 71.5% disagree.
- My child's needs would be better met if an advocate familiar with Rett syndrome attended the IEP or IHP meeting with me. 60.2% agree.
- There has NOT been much direct communication between my child's doctor and her teachers and therapists. 46% agree.
Assistive Technology
- My child's program provides AAC training to everyone that will use AAC with my child, including parents. 57.9% disagree.
- In addition to speech therapy sessions, my child's program pays a therapist to spend time to personalize and adapt AAC devices. 67.6% disagree.
- The Department of Education or day habitation program was reluctant to provide AAC devices. 49.3% agree.
Education
- Being diagnosed with Rett syndrome had a negative impact on the expectations for my child's education. 41% agree.
- I feel I could use more help and direction in meeting my child's educational needs. 44% agree.
- My child's educational progress is stagnating. 58.5% agree.
Delivery of Services
- Are any of your child's therapy sessions (speech, physical therapy and/or occupational therapy) at school or her day program 60 minutes? 68.8% said no.
- My child receives PT 2 hours or less/week at home or after school. 88.4%
- My child receives OT 2 hours or less/week at home or after school. 88.4%
- My child receives ST 2 hours or less/week at home or after school. 89.8%
- My child receives OT 2 hours or less/week. 92.3%
- My child receives PT 2 hours or less/week. 88.4%
- My child receives ST 2 hours or less/week. 88.4%
- My child receives ABA 6 hours or less/week. 89.3%
Impact of Services
- The number of words my child speaks has NOT increased with speech therapy she receives through school or program. 81.8% agree.
- My child's purposeful hand use has not steadily improved despite receiving therapy. 57.6% agree.
- My child is able to say ten words or fewer. 89.6% agree.
Families are pleased with the following issues:
Attitude Regarding Rett Syndrome
- The adult program my child attends handles her needs with respect. 88.2% agree.
- I have an active role in the team meeting or IEP and IHP process. 76.5% agree.
- I feel pressure to sign the IEP. 65.3% disagree.
- The school or program staff is willing to learn about ways to work with individuals with Rett syndrome. 71.3% agree.
Education
- I am or was satisfied with the early intervention services that my child received. 76.7% agree.
- I am or was satisfied with the services my child received through CPSE. 71.7% agree.
- My child's therapy goals, as set forth on her IFSP, IEP or IHP, are regularly updated to accommodate her changing needs. 66.2% agree.
- I am satisfied with my child's school or day habitation program. 71.6% agree.
- I felt pressured by the school (or Department of Education) to withdraw my child from the school setting due to medical reasons (e.g. seizures, frequent absences, etc.) 87.7% disagree.
- My child had no problems staying in the same educational setting between the ages of 18-21. 76.2% agree.
- I am satisfied with the amount of communication and feedback that I receive from my child's school or program. 71.2% agree.
- I, as a parent/guardian, do NOT feel sufficiently included in classroom work and activities. 65.3% disagree.
- The school or program staff effectively collaborates as a team (teacher/paraprofessional/principal/therapists/other service providers). 75% agree.
- Service providers (such as teachers and therapist) that interact with my child speak to her, explain their actions and believe that she understands them. 75% agree.
Delivery of Services
- There is a paraprofessional/aide assigned to only my child all day. 48.4% confirm.
- The Department of Education always includes educational goals on the IEP. 71% agree.
Impact of Services
- The paraprofessional promotes independence in my child. 74% agree.
- My child's physical abilities have steadily improved with the amount of therapy that she receives through her school or program (including Early Intervention). 61.1% agree.
In Summary
It is clear from the results of the survey that children with Rett syndrome are underserved educationally. Many parents feel that their child's education is stagnating and that administrators do not fully understand the complicated profile of someone with Rett syndrome.
It seems that parents of adults are pleased with the way their daughter's needs are regarded and many are happy with their adult daughter's program. Many parents are also pleased with the way that service providers interact with their child.
71.8% of parents/caregivers stated that eye gaze or looking at what she wants is the most common way in which their child communicates and yet only 14% of those surveyed have an eye gaze computer or device. In addition, almost 90% of girls have a vocabulary of ten words or fewer. It is clear that the most urgent area to be addressed is that of Augmentative and Alternative Communication (AAC).
Rett Syndrome Center's Plan of Action
- Build a library comprising both low-tech and high-tech communication devices, including switches, Tango, My Tobii, etc.
- Evaluate children and adults with Rett syndrome on site by a certified professional.
- Program and maintain the child/adult's use of specific devices and switches.
- Provide evidence of a child/adult's ability to use AAC device(s) through the use of video tape and a written report.
- Prove that individuals with Rett syndrome can learn.
In Closing
We would like to thank all the families who found the time, regardless of their busy schedules, to help us to understand their needs better so that we may serve them in the future. We would also like to ask as many families as possible, regardless of their location, to complete the survey. Since we have evaluated children from many states within the United States, our impression is that educationally, there are groups of children that are less understood than what is summarized in this review. In order to advocate for them, we need to hear from their parents/caregivers. If your time allows, we ask that you please donate twenty minutes of your time to this mission and encourage other families to complete the survey.
We thank you for participating in our work and we welcome your feedback!
